What to say about me?? I love life. I am a positive person. I am very spiritual and my faith is something I could not live without. I am going to be 47 in September. I have 4 kids and have been married for almost 27 years. My oldest is my daughter Jen. She is 24. My son in law is in the Army and recently back from Iraq (safely, thank God) They have 2 boys, Mikey who's 4 and Zachary who's almost 2. I never could have imagined that being a grandmother could be soooo awesome. They will be moving out of state in just a few weeks and the thought is devestating to me. We have a very strong relationship so I know we'll be ok it's just going to be very, very hard for me. There are just no words for the support and encouragement Jen gives to me. And my grandson's........well, on those bad lupus days they make me smile and give me the strength to keep on going, they are amazing! My next 3 kids are all sons. Bryan who is 22 and a Marine. He also is just recently back from Iraq (safely, thank God). We have had a bump or two in the road his senior year of high school but I think his tour in Iraq really helped him learn to appreciate the value of his family. It is still sooo hard for me to see pictures of Bryan holding this great big gun and know that he has defended our country with his life. He has grown into a man that I am so proud of. Next is Timmy who just turned 18 and graduated high school. He wants to take some time off to work then go to college and do something with computers and web design. He's a great kid with a great personality. He has so much potential but is lacking the drive right now. My youngest is Christopher who's 16 and my biggest challlenge ever. He can be the sweetest kid in the world but can also be just plain nasty, which is the case a lot these days. Teenage stuff?? I don't know. All I know is that 3 years ago I was diagnosed w/lupus. About 6 months later I was in a car accident, some old lady hit the gas instead of the break and I hurt my neck and back. My life has not been the same. The lupus affects mostly my legs,( joints and muscles) the accident put me over the edge physically by affecting me everywhere else. Last year I finally got to a point w/my meds that I can function much better physically........then good old lupus hit me w/major cognitive problems. I'd get lost and not know my way to work or home, can't count money blah, blah, blah. Definitely did a number on my self confidence. Anyway, I worked in the court system at a job I so loved. I had been a stay at home mom my whole life (NO REGRETS) working was now finally something for me, so when I had to resign I was beyond crushed. Unfortunately I didn't get much support from my husband reguarding the lupus or giving up my job, so my boys, well, 2 of them, followed in Dad's footsteps which added to my difficulties. My husband has come around a lot but still can be very cruel about my limitations. I feel more and more drained and angry trying to deal with his denial on top of dealing with my daily pain and fatigue. We have had 2 of our kids move out and the other 2 are not far behind. The empty nest is almost here. I should be looking forward to time alone w/my husband but I'm not. I can't help but feel that he's given too little too late. And he's such a negative, selfish person. I just wish that for one day my husband as a healthy person could walk in my shoes to really feel the amount of effort it takes to just get through the day. I just don't have the energy or desire to battle his negativity on a daily basis. It's hard enough for me when I feel like I am always giving and trying until exhaustion and I still get criticised(sp). I guess I just want some unsolicited encouragement on a consistent basis, I want to trust that my husband won't keep taking 1 step forward and 5 steps backwards. Words hurt and are hard to forget (at least for me). I try to stay positive and count on my faith and myself but it's hard. Is wanting that from my husband an unrealistic expectation? There has to be husbands out there that are sensitive to their wife's illness????? Well, as always, one day at a time. Tomorrow will be better. Share your thoughts, I'll be waiting!
I just wanted to say, "hi", and that I understand a lot of what you are going through. I just turned 33 and have 2 children. A son that's 8 and my daughter is 3. Right now, they really don't understand why mommy feels bad sometimes or why mommy goes to work but is so tired when she gets home she doesn't play very long sometimes. They do; however, make my bad days better and my good days GREAT! They are so funny, especially together, and they love to entertain! As far as the things you mentioned about your husband, I UNDERSTAND COMPLETELY! I actually posted a similar message several weeks ago. He does not understand that there are many days that just getting out of bed is such an accomplishment in my own mind! I, like you, am also having a lot of "forgetful" moments. I often feel like my husband would not make it through the day if he were not able to make some sort of "remark" about my illness and he thrives on the forget fulness part. I'll often tell him something or ask him something and a couple of hours later I'll tell or ask him the same thing again. Of course, he makes a big deal about it and makes me feel about an inch tall. He also gives me a very hard time about not feeling like doing a lot and, especially on the weekend, staying in bed longer than usual. I work a full time job and then come home and take care of the kids and house all while in, quite often, a great deal of pain, plus I can't take many of the pain meds because they either make me sick or "out of it" and I can't function with 2 kids at home. On the weekend, I just want to relax for just a bit. He says I come up with excuses to not do anything and the word "lazy" has come up more than once. I don't think he understands that I wish it were laziness and not pain...I could handle that a lot better. He also says these things in front of our children and now our son will often tell me to just get out of bed that I never want to do anything....I've explained to him that sometimes mommy just needs a little longer than others to get going, but I also make sure, no matter how much pain I'm in, that I do something with my kids in my spare time. Even if it is going to a movie or to watch my son at a ballgame (with the heat & humidity in Mississippi, this is a feat in itself) My husband also can be very selfish and self absorbed. He doesn't help out much around the house unless I absolutely BEG, and then he half-way does things because he knows I won't ask for help again for a while. I do love him and even though I've painted him to be well, kind of an ass, he is really a pretty good guy and an excellent dad. He just does not understand what I go through and really doesn't act like he wants to know. It's like he thinks I brought this whole "Lupus" thing on myself or that Lupus doesn't exist. Hopefully, over time, he will become more understanding. If not, I'm not sure what our future will hold. Oh well, now that I've written my rambling novel, the whole point was to just let you know that I understand what you are going through with the husband not being very supportive. You will be in my prayers and please keep me in yours.
Mahalo,
Lani93
Michelle
Explaining Lupus to a child
- thebeachbum61
on Jun. 26, 2007 at 12:08 PM